A Woman's Journey With Rare Disease

TOUGH CALLS: In the Workplace – To Disclose Or Not To Disclose A Disability?

This is an issue I continue to struggle with even having discourse about. How much of my reality/health status do I discuss with my employer & or colleagues? Do I disclose anything & when? If I’m looking for a job when do I bring the subject up? I came across this article. That’s what triggered these thoughts; even now, when I’m not working, because I remember those days all too well. They weren’t that long ago.

This issue has not only come up for me but from time-to-time been chatted up & batted about in many of my rare disease support groups & other forums. I’ve been pretty lucky for most of my career to have decent workplaces. At least not outright or downright discriminatory ones, save one.

The one really foul run-in I did have was short-lived, yet painful. However, back then I really didn’t know my rights at all. I didn’t even know there was a thing called ADA paperwork (Americans with Disabilities Act) for these types of instances. Yet what actually transpired with me, could have easily happened to anyone else with a disability or not; I have to say but it was related. Even views of run-of-the-mill sicknesses can vary employer to employer. (All of us have experienced or swapped stories about docking people for taking sick time. Or, how one person refuses to take any sick time even when it’s granted. They come in & bring the flu or whatever the hell else they picked up & gift it to everyone as a result.)

In this case though, I did retain representation who knew ADA law & did what I could to fight it. But my hands (& my lawyer’s) were tied when the Equal Employment Opportunity Commission (EEOC) refused to mediate. I had to let it go then, but that changed my thinking out front on how I frame these discussions. This was circa 2012. I have only had this issue this time, not before, not since, & I hope to never again. Because it’s demoralizing & degrading to say the least.

Prior to 2004, I had a few jobs, as I had my first real job around 2000 or 2001 out of college. I had no outward issues then or even much of anything going on so the thought of even having a discussion with an employer never honestly entered my mind. Except in late 2001/2002 when my lung collapsed. I went around for a day not even sure of what had transpired until my manager noticed my lips were blue. She called me aside discretely. But even then, none of us were aware there was anything wrong past just some weird fluke. However, a bit later, I asked for an extra week off to handle something & said I would take it unpaid if I didn’t have it in vacation time. After that, I was “kid-gloved”. Projects & work shifted to other editors. It made me mad, but in the end at that particular job it didn’t matter much. It would have happened regardless since I was laid off. It wasn’t the employer who was the issue, it was the manager & her own personal views & biases.

In August 2004, I was at work when my left lung collapsed while I was the printer. This was different from the previous one; it was much more painful & intense. I called my doctor & said it was either a lung collapse or allergic reaction of some type because of how quickly it came on & how I felt. Once I found out it was another collapse, and this time I did in fact need surgery & to be gone for a few weeks; I was terrified. I had opted not to disclose anything to anyone at that point. Yet they had all seen me have an issue & need to leave suddenly.

Would my manager felt lied to? Would I be kid-gloved again? I didn’t know what to do.

While I was out on leave, I had a private conversation with my manager & was honest. I told her I did not disclose it because this was not a daily occurrence for me. I was fine before, it might not even happen again. I felt I had proven myself but I still wanted to be seen for my performance & talents not any medical issues. This manager, & subsequent managers were understanding. As were my colleagues. I seldom ran into any issues after even when I had to take subsequent leaves. I was given time when I needed to take it, & was never made to feel guilt for having to ask. Though there were other issues with my workplace, being discriminated against for problems related to my rare diseases thankfully were not one of them.

It was only when I gave up that job & found this other job in 2012 (that seemed like a great fit) that I had that run-in I spoke of earlier. It was a strict training program so everyone was afraid to call out that first 7 weeks for even a sniffle. But then I became ill during training & later found myself out of a job. I will spare the details here, but I was publicly & illegally humiliated in the way I was let go. No question. But after that was when I found out about ADA paperwork from my lawyer. She asked if I had been offered or completed any?

Then I started after that, for any final phase interview with an offer from a potential employer, requesting it & disclosing what I felt I needed to with my doctor’s help.

How much did I disclose? It varied over employer & over time. How concerned they seemed or how much I felt they needed to know if I really did need some type of accommodation.

However, most employers agreed that my work ethic & attendance were often better than many of my peers who didn’t have health issues at all, so what little I asked for was usually granted without question & without issue.

I will say, I know no employer can be perfect in this regard. But as long as they made a sincere attempt when I needed accommodation but then also saw me as a valuable asset for the talents & skills I bring to the job then that went a long way. It was at the very least, a start. Many workplaces think they are open, accessible, & diverse, but really how many of them truly are? Especially when push comes to shove? Not near enough, sadly.

I will say my present workplace (even after I disclosed a bit more information than normal because I needed to take an extended leave) were actually responsive & understanding. So that was a pleasant surprise. I wish more people could say the same. But I do know people who get fired for having a terminal illness or having a disability. It’s often an ugly truth that no one wants to acknowledge even when happens, but it does.

It can be hard, very hard, for those of us with invisible illnesses, terminal illnesses, or disabilities in general to be treated as equals & seen for our professional skill. I’m not naive to that fact.

That’s why I find it so tough to even begin to try & answer any questions like these when people ask them. What worked for me may not be the only strategy. It may not be a workable one for them or for their situation. There is no right or wrong answer. Just the tough judgement call.

To a degree, this type of heartache somewhat starts all over again when someone’s disability/illness finally renders them unable to work at all. It can be a really hard decision to know when to draw the line as to the choice of when to stop working. In my case, my doctors & I made that call, as far as the final call went. But the warning shot was dictated by an unexpected medical event which only added to my confusion & embarrassment because again, it happened on the clock (in front of my colleagues).

In retrospect though, I should have probably made that choice sooner than I did. But I fell into many of the same traps that people with any number of catastrophic circumstances make, which is often this “mantra”: just keep going until you absolutely can’t. Even if you run yourself aground in the process.

I only realized the true consequence of my actions when I was filling out the social security disability paperwork. In it, I was forced to lay out all the ugly truth to the government as to why I couldn’t work any longer. Why it was physically impossible for me to work. That was extremely hard.

Even in the midst of all that, there were people in certain circles who I had come to for support were anything but, (luckily not my family or friends). The people who were not in my position, (some still totally healthy) were telling me all kinds of what they deemed “helpful” advice. “Well, why don’t you do xx?” Or “Can you work XX hours with this X thing, take a break & do x more?”

Not that simple folks. This is also ableism in action, even if the person giving the advice sees it as well-meaning or well-intentioned. Think I don’t want to work? I have career goals & things I’d like to accomplish professionally the same as anyone. I worked towards them for as long as I could. Some things are beyond my control.

For awhile, I felt my job was the only aspect I had any say or control over, or anything that (as I continued to become sicker) gave me any semblance of normalcy. I felt things couldn’t be that bad if I could still work. (Oh the guilt trips we give ourselves.)

The ugly truth was my doctors didn’t want me working. They weren’t going to come out and order to me to stop but everything they were telling me was basically saying that anyway. They were steering me in that direction.

They told me point blank, “You have end-stage lung disease. People pre-transplant sometimes do work, but it’s very hard if not impossible for them. Especially the sicker they get, yet we realize why they choose to, they have responsibilities & obligations. But we really don’t advise it unless there’s no other choice. X, X, & X aren’t really possible for you like they were before without a higher cost.” So if they told me to stop, I knew I needed to.

At least at that point I had something to take back to the people who thought I was “throwing in the towel” too quickly. Yet it’s not for other people to decide. It is not their life, & livelihood. It’s mine.

This can be an equally tough call on par with the disclosure issue to ever have to make professionally & personally. People need to see it for what it truly is & stop judging people on how they handle it themselves.

One’s identity is not their career alone, but yet many people in society function & act like it is. Just like one’s identity is not what ails them. Yet there’s plenty of stigma, judgment, & “advice” in spades for both, unfortunately. It needs to stop.

I offer none of these. I can only say that the person has to decide in both of these instances what is in their own best interest & that sometimes takes some time to sort or figure out. It’s hard because there isn’t really that luxury in either of these situations. One does the best they can to weigh things out & balance them. Hoping in the end, it works out in their favor more often than not.

While articles like this are helpful to at least raise dialogue and awareness of this issue, they oversimplify it. It’s not an easy decision, it’s a complex one.